Psychosocial Assessment of Candidates for Transplant (PACT) as a tool for psychological and social evaluation of allogeneic hematopoietic cell transplantation recipients.

Psychosocial Assessment of Candidates for Transplant (PACT) is a tool originally developed to address psychosocial risks in solid organ transplant recipients and has the potential for application to hematopoietic cell transplantation (HCT) recipients. In a retrospective cohort study, we reviewed 404 adult allogeneic HCT cases from 2003 to 2014 to identify predictors of adverse psychosocial status as determined by PACT. Final PACT rating was poor/borderline (score 0-1) in 5%, acceptable (score 2) in 22%, good (score 3) in 44%, and excellent (score 4) in 29% recipients. In multivariable regression, higher PACT score was associated with White race (odds ratio [OR] 2.95, P < 0.001), having a related donor (OR 1.61, P = 0.015), and a higher quality of life score (OR 1.22/ 10-point increase in FACT-BMT total score, P < 0.001). PACT score correlated with all quality of life subscales. The final PACT score was associated with non-relapse mortality (HR 0.82/ 1-point increase, p = 0.03) in multivariable analysis that considered patient and disease factors, but not in models that also included transplant-related factors and performance status. PACT score was not associated with overall survival. PACT can be considered as part of a comprehensive psychosocial assessment for identifying patients who may require additional resources around allogeneic HCT.

Short-term side effects and attitudes towards second donation: A comparison of related and unrelated haematopoietic stem cell donors.

The Nordic Register of Haematopoietic Stem Cell Donors (NRHSD) has registered related and unrelated donors from 10 transplant centres in Sweden, Norway, Finland and Denmark since 1998. We present a prospective, observational study of 1,957 donors, focusing mainly on the differences between related and unrelated donors. Related donors are reported to have more comorbidities, but similar side effects compared with unrelated donors. Side effects after BM or PBSC donation are generally of short duration and in this study no deaths, myocardial infarctions, splenic ruptures, or thromboembolic events are reported. Interestingly, related donors express more hesitancy towards donating again when asked 1 month after donation.

Predictors of decision ambivalence and the differences between actual living liver donors and potential living liver donors.

BACKGROUND: The decision to become a living liver donor is a stressful event. Ambivalence in decision making may result in psychological distress. Thus, the purpose of this study was to provide a description of the ambivalence of potential living liver donors, to examine the predictors of ambivalence, and to compare the ambivalence of potential living liver donors with that of actual living liver donors. METHODS: This descriptive and correlational study was conducted in a medical center from August 2013 to December 2015. Self-reported questionnaires were used to collect data. A total of 263 potential living liver donors who were assessed for donation to their parents were included in this study. RESULTS: The mean age of the total sample was 30.7 years (SD = 6.39, range = 20-47), and males comprised 53.6% of the sample. The majority of the potential donors had a college education (70.8%) and were single (63.5%). Of the total sample, the mean score for ambivalence was 4.27 (SD = 1.87, range = 0-7). Multivariate analysis revealed that the Mental Component Summary (MCS) of quality of life (ß = -0.24, p < 0.01), family support (ß = -0.17, p = 0.007), and intimacy (ß = -0.13, p = 0.04) were significant protective predictors of ambivalence. Actual living liver donors had significantly lower ambivalence (3.82 versus 4.60), higher intimacy with recipients (3.55 versus 3.34), higher MCS (45.26 versus 42.80), and higher family support (34.39 versus 29.79) than did the remaining potential living liver donors. CONCLUSION: Ambivalence is common in potential living liver donors. The MCS of quality of life, family support, and intimacy were protective predictors in terms of ambivalence. Future research should explore other factors and design interventions targeted toward reducing ambivalence, promoting family support, and enhancing the mental dimensions of quality of life in potential living liver donors.

Death of recipients after kidney living donation triples donors' risk of dropping out from follow-up: a retrospective study.

Although kidney transplantation from the donation of a living donor is a safe treatment for end-stage renal disease, inferences about safety of living kidney donors might be biased by an informative censoring caused by the noninclusion of a substantial percentage of donors lost to follow-up. With the aim of assessing the presence of a potential informative censoring in living kidney donation outcomes of Catalan donors for a period of 12 years, 573 donors followed and lost to follow-up were compared. Losses of follow-up over time were also assessed by univariate and multivariate survival analysis, along with Cox regression. Younger and older ages, and the death of their recipient differentiated those donors who were lost to follow-up over time. The risk of dropping out from follow-up was more than twofold for the youngest and oldest donors, and almost threefold for those donors whose recipient died. Results of studies on postdonation outcomes of Catalan living kidney donors might have overlooked older and younger cases, and, remarkably, a percentage of donors whose recipient died. If these donors showed a higher incidence of psychological problems, conclusions about living donors' safety might be compromised thus emphasizing the necessity of sustained surveillance of donors and prompt identification of these cases.

Who requests their sperm donor's identity? The first ten years of information releases to adults with open-identity donors.

OBJECTIVE: To report findings from 10 years of requests from adults eligible to obtain their open-identity sperm donor's information. DESIGN: Analysis of archived family and donor data. Semistructured interviews at information releases. SETTING: Not applicable. PATIENT(S): A total of 85 DI adults requesting 43 donor identities; program data on 256 DI families. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): We identified [1] demographic predictors of requesting donor identities, [2] information release timing and length, and [3] request motives. RESULT(S): Just >35% of eligible DI adults requested their donor's identity. Adults ranged from 18-27 years, requesting at median age 18 years. More women than men requested. Proportionally fewer adults requested when they had heterosexual-couple parents, and proportionally more when they had one rather than two parents. In interviews, the common theme was wanting to know more about the donor, especially about shared characteristics. Most adults planned to contact their donor. More than 94% of adults had donors who were open to contact; adults expressed modest expectations about this contact. CONCLUSION(S): In 2001, the first adults became eligible to obtain their open-identity sperm donor's information. Ten years of identity requests at one program indicates that information about one's donor is important to a significant proportion of these DI adults. Most requested their donor's identity soon after becoming eligible, suggesting some urgency to wanting the information. Interview data highlighted the role of donor information in helping adults better understand themselves and their ancestry. Findings hold important implications for practice and policy.

Views of US Voters on Compensating Living Kidney Donors.

IMPORTANCE: Patients in the United States waiting for kidney transplantation die in increasing numbers owing to the severe kidney shortage, which might be alleviated by compensating living kidney donors. OBJECTIVE: To determine the willingness of voting US citizens to become living kidney donors and to ascertain the potential influence of compensation for donation. DESIGN, SETTING, AND PARTICIPANTS: A professionally designed quantitative survey was administered by an international polling firm in June 2014. Information was collected on willingness to donate a kidney and the potential influence of compensation ($50 000); survey data included respondent age, income, education level, sex, US region, race/ethnicity, marital status, political affiliation, likelihood to vote, and employment status. The survey was performed via a random-digit dialing process that selected respondents via both landlines and mobile telephones to improve population representation. The survey included 1011 registered US voters likely to vote. MAIN OUTCOMES AND MEASURES: The degree to which the US voting public is willing to donate a kidney and the perceptions of current voters toward paying living kidney donors. RESULTS: Of the 1011 respondents, 427 were male and 584 were female, with 43% of participants between ages 45 and 64 years. With respondents grouped by willingness to donate, we found that 689 (68%) would donate a kidney to anyone and 235 (23%) only to certain persons; 87 (9%) would not donate. Most (59%) indicated that payment of $50 000 would make them even more likely to donate a kidney, 32% were unmoved by compensation, and 9% were negatively influenced by payment. CONCLUSIONS AND RELEVANCE: Most US voters view living kidney donation positively, and most would be motivated toward donor nephrectomy if offered a payment of $50 000. Because most registered voters favor such payments, and because thousands of lives might be saved should compensation increase the number of transplantable kidneys, laws and regulations prohibiting donor compensation should be modified to allow pilot studies of financial incentives for living kidney donors. Outcomes of such trials could then result in evidence-based policies, which would incorporate fair and just compensation to those persons willing to undergo donor nephrectomy.

Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study.

BACKGROUND AND OBJECTIVES: Most kidney donors view their experience positively, but some may experience psychosocial and financial burdens. We hypothesized that certain donor characteristics, poor outcome of the recipient, negative perceptions of care, and lack of support may be associated with poor psychosocial outcomes for donors. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: The Renal and Lung Living Donors Evaluation Study (RELIVE) examined long-term medical and psychosocial outcomes for kidney donors (at three U.S. transplant centers) who donated between 1963 and 2005. Standardized questionnaires evaluated donor perspectives, recovery time, social support, motivation, financial impact, insurability after donation, and current psychological status. Questionnaires were mailed to 6909 donors. RESULTS: Questionnaires were returned by 2455 donors, who had donated 17 ± 10 years earlier (range, 5-48 years), a response rate of 36%. Most (95%) rated their overall donation experience as good to excellent. Rating the overall donor experience more negatively was associated with donor complications, psychological difficulties, recipient graft failure, and longer time since donation. Nine percent (n=231) reported one or more of the following poor psychosocial outcomes: fair or poor overall donor experience, financial burden, regret or discomfort with decision to donate, or psychological difficulties since donation. Recipient graft failure was the only predictor for reporting one or more of these poor psychosocial outcomes (odds ratio, 1.77; 95% confidence interval, 1.33 to 2.34). Donors with lower educational attainment experienced greater financial burden. One of five employed donors took unpaid leave; 2% reported health and life insurability concerns. CONCLUSIONS: Although the majority of donors viewed their overall donation experience positively, almost 1 in 10 donors reported at least one negative consequence related to donation. Recipient graft failure was associated with poor psychosocial outcome, defined as one or more of these negative consequences. Some donors were financially disadvantaged, and some experienced insurance difficulties. Interventions to avoid negative psychosocial and financial consequences are warranted.

Is donating a kidney to a friend bad for your marriage?

Studies have shown that kidney donation to a spouse has a positive impact on marriage. This study was done to evaluate the impact on marriage when donation occurs to someone other than the spouse. Two groups of donors from our centre who donated around the same period were studied: donation to a spouse (spouse donor (SD)) or to someone other than the spouse (non-spouse donor (ND)). A survey, the Revised Dyadic Adjustment Scale, was used to evaluate the effect of donation on the marriage. This tool consists of 14 questions that measure how satisfying and stable the relationship is. The results showed equal or better marriage scores in the ND group compared with the SD group. The NDs scored higher on two questions, one regarding agreement or disagreement on career choices (P = 0.05) and the other regarding the frequency of having stimulating exchanges of ideas with one's spouse (P = 0.02). With the highest possible total score of 69, NDs scored 53.4 and SDs scored 47.7 (P = 0.16). Scores of 47 and below indicate marital distress. In one final additional question, 97% of NDs reported 'no change or good effect' on the marriage, similar to 91% for SDs (P = 0.46). This is the first study to evaluate the effect of kidney donation on the state of marriage when the spouse is not the recipient. It appears that marriage is not impacted negatively when kidney donation occurs to someone other than the spouse.

Ethical issues regarding related and nonrelated living organ donors.

The ethics of the clinical practice of transplanting human organs for end-stage organ disease is a fascinating topic. Who is the "owner" of the transplantable organs of a deceased, brain-dead patient? Who should have a right to receive these organs? Who set the boundaries between a living donor's autonomy and a "paternalistic" doctor? What constitutes a proper consent? These questions are only some of the ethical issues that have been discussed in the last 60 years. All of these ethical issues are intensified by the fact that supply of human organs does not match demand, and that, as a consequence, living-donor organ transplantation is widely utilized. The aim of this article is not to be exhaustive but to present the general ethical principles of beneficence, nonmaleficence, and justice as applied to organ transplantation. Moreover, the topic of reimbursement for organ donation is also discussed.

A review of the haematopoietic stem cell donation experience: is there room for improvement?

Donation of haematopoietic stem cells, either through BM or PBSC collection, is a generally safe procedure for healthy donors although adverse reactions are a definite risk. The invaluable source of donation and its central role in transplantation implies that every effort should be made to alleviate possible difficulties the donor encounters. The physical and psychological reactions to donation have been established for some time, but less is known about the factors that are associated with a poorer donation experience. In this article, we provide an overview of the physical and psychological donation experience and focus attention on demographic, physical and psychological factors that may influence this donation experience. Understanding that toxicity profiles vary with certain donor characteristics is crucial as this knowledge could influence practice in numerous ways including the modification of joining and recruitment policies and the improvement of supportive measures and donor follow-up procedures. Although this review deals with both unrelated and related donors (RDs), there is a relative paucity of regulation of RD care and we call for more attention to this area. Owing to the relative rarity of donation in each country, a global effort to collect donor outcome data is needed.

Willingness to Consider Non-Directed Kidney Donation.

The purpose of the study was to determine whether factors, including knowledge about living kidney donation or acquaintance with a donor or recipient, are related to willingness to consider donating a kidney. Participants were randomly assigned to read (n = 78) or not read (n = 71) educational materials regarding living donation. All participants then completed a living donation knowledge quiz, indicated whether they knew a donor or recipient, and indicated their support for living donation. Knowledge was not related to willingness to consider donation. Acquaintance with a living donor predicated greater willingness to act as a non-directed living donor, as did acquaintance with a transplant recipient. Decisions regarding whether to consider acting as a living organ donor may be related to whether a person is acquainted with an organ donor or a recipient. Emphasizing personal connections to transplant may lead to increased acceptance of living donation.

Health-related quality of life of bone marrow versus peripheral blood stem cell donors: a prespecified subgroup analysis from a phase III RCT-BMTCTN protocol 0201.

Hematopoietic stem cells can be procured from unrelated donors via either the bone marrow (BM) aspiration or peripheral blood stem cell (PBSC) collection methods. There is no evidence from prospective randomized trials in the unrelated donor setting about the relative health-related quality-of-life (HRQoL) benefits/costs to donors. The goals of this prospective longitudinal investigation were to describe and compare the donation-related HRQoL experiences of 332 BM and PBSC donors. Donors were interviewed before donation, 48 hours after donation, weekly until fully recovered, and at 6 and 12 months after donation. Before donation, BM donors had lower confusion, fewer concerns, and were more prepared for donation. Shortly after donation, BM donors reported more physical side effects. BM donors also reported more donation-related impact on their social activities. However, BM donors reported somewhat better psychological status and were more likely to indicate that the donation made their lives more meaningful. There were virtually no longer term differences in the experiences of the 2 donor groups, including no recovery time difference beginning 3 weeks after donation. Although BM donors may experience the process as more physically stressful and more psychologically beneficial in the short term, the longer term HRQoL consequences of BM and PBSC donors are similar.

Live liver donors' risk thresholds: risking a life to save a life.

BACKGROUND: There is still some controversy regarding the ethical issues involved in live donor liver transplantation (LDLT) and there is uncertainty on the range of perioperative morbidity and mortality risks that donors will consider acceptable. METHODS: This study analysed donors' inclinations towards LDLT using decision analysis techniques based on the probability trade-off (PTO) method. Adult individuals with an emotional or biological relationship with a patient affected by end-stage liver disease were enrolled. Of 122 potential candidates, 100 were included in this study. RESULTS: The vast majority of participants (93%) supported LDLT. The most important factor influencing participants' decisions was their wish to improve the recipient's chance of living a longer life. Participants chose to become donors if the recipient was required to wait longer than a mean ± standard deviation (SD) of 6 ± 5 months for a cadaveric graft, if the mean ± SD probability of survival was at least 46 ± 30% at 1 month and at least 36 ± 29% at 1 year, and if the recipient's life could be prolonged for a mean ± SD of at least 11 ± 22 months. CONCLUSIONS: Potential donors were risk takers and were willing to donate when given the opportunity. They accepted significant risks, especially if they had a close emotional relationship with the recipient.

Volunteer unrelated donor experience after administration of filgrastim and apheresis for the collection of haemopoietic stem cells: the Australian perspective.

BACKGROUND: Voluntary donations of peripheral blood stem cells after administration of filgrastim (granulocyte-colony stimulating factor, G-CSF) are undertaken throughout the world by healthy individuals, but the short-, medium- and long-term adverse events during and after donation are not fully understood. AIMS: We document the experience of donors of peripheral blood stem cells mobilised by G-CSF at Australian Bone Marrow Donor Registry collection centres. METHODS: When the Australian Bone Marrow Donor Registry commenced collecting mobilised peripheral blood stem cells, based on data used for registration of G-CSF, all adverse reactions in donors were documented prospectively to determine the rate and severity of events. A total of 512 consecutive first-time donors assessed between July 2001 and March 2010 were included in this study. RESULTS: The median age at work-up was 40 years and 71% of donors were male. A large proportion of donors (91%) experienced bone pain during administration of G-CSF, and in fewer numbers headache (61%) and fatigue (61%). Bone pain was associated with a body mass index of overweight/obese (P = 0.03). Headache (P = 0.03), muscle pain (P = 0.03) and fatigue (P = 0.001) were all significantly associated with female sex. More than a quarter (28%) of donations involved a range of complications at collection. CONCLUSION: The incidence of short- and medium-term symptoms and events observed provide support for the information provided to unrelated donors at counselling. Follow up of the consequences of unrelated voluntary donation remains important to provide accurate and relevant information to prospective donors.

Strategies targeted at motivating unrelated living kidney donation.

BACKGROUND: This paper aimed to assess the willingness of Malaysians with post-secondary education to be living kidney donors. MATERIAL AND METHODS: From the total of 1,310 living kidney donor respondents in Kuala Lumpur and its suburbs, we focused on 688 respondents with post-secondary education. These 688 respondents were asked whether they were willing to become living kidney donors if the government provides a reasonable amount of financial incentive. Those who were not willing to be donors (490) were then asked the reasons for their unwillingness. Six options were given and respondents can choose more than 1 option. RESULTS: Malaysians with post-secondary education remain unconvinced to be living donors even when provided with monetized incentives. The main reason cited was they are not convinced that individuals can live with just 1 kidney. CONCLUSIONS: There is a need for the government to develop new ways to promote organ donation. These include strengthening government coordination of medical procedures and creating public awareness about the safety of living with 1 kidney. Setting up new institutions such as donor clinics, creating a living donor registry, and having independent donor advocates are also instrumental.

Sperm donor recruitment, attitudes and provider practices--5 years after the removal of donor anonymity.

STUDY QUESTION: Has the change in donor anonymity legislation in UK affected the recruitment of men wanting to be sperm donors and also affected the attitudes of the practitioners who provide donor sperm treatment? SUMMARY ANSWER: We have performed fewer IUI and IVF treatments using donor sperm following the change in legislation in April 2005 than before. However, we have seen an overall increase in men wanting to donate their sperm, including a small increase in men from ethnic minorities. WHAT IS KNOWN ALREADY: Sweden, which removed donor anonymity in 1985, had an initial drop in men wanting to donate and then 10 years later started to have an increase. The Human Fertilisation and Embryology Authority (HFEA) and other studies in the UK have shown an overall downward trend, but have not been able to compare large time scales either side of the change in legislation. STUDY DESIGN, SIZE, DURATION: This was a retrospective descriptive study that looked at all men who approached the clinic between the years 2000 and 2010, i.e. 5 years either side of the change in legislation (April 2005). Overall, we had 24 men wanting to be donors prior to the rule change and 65 men after the rule change. We also investigated the total number of all treatments with donor sperm, and this included a total of 1004 donor sperm treatments prior to the change in legislation and 403 donor sperm treatments after the change in legislation. PARTICIPANTS, SETTING, METHODS: The study was set in an NHS IVF clinic in South East London. We compared the indicators of service provision, provider practices and donor attitudes, in the period between April 2000 and March 2005 (Group A) with those between April 2005 and March 2010 (Group B), i.e. 5 years either side of the change in legislation. MAIN RESULTS: There were 875 IUI treatments and 129 IVF or ICSI treatments in Group A and 325 IUI and 78 IVF/ICSI treatments in Group B with the use of donor sperm, of which, 11.9% (119 out of 1004) in Group A and 39.5% (159 out of 403) in Group B were with donor sperm recruited by our unit. The clinical pregnancy rate per cycle of treatment in Group A was (86 out of 875) 9.8% for IUI and (27 out of 129) 20.9% for IVF/ICSI and in Group B (32/325) 9.8% and (28 out of 78) 35.9%, respectively. There was a sharp yearly fall in donor sperm treatments from 2004. Twenty-four men were screened in Group A, of which 18 (75.0%) were recruited for long-term storage and 12 (50%) were registered as donors with the HFEA when the sperm was used, whereas in Group B, 65 men were screened, 53 (82.0%) were recruited and 24 (36.92%) were registered as donors. Six (24.0%) men in Group A failed in screening because of poor semen analysis when compared with 9 (13.8%) men in Group B. The majority of post-recruitment dropouts were because of loss of follow-up or withdrawal of consent. More donors in Group A were white (92.0 versus 77.0%) and born in UK (92.0 versus 68.0%) when compared with those in Group B. Donors in Group B were more likely to be single (46.0 versus 4.0%) and to have informed their relevant partner of donation (71.0 versus 54.0%) when compared with those in Group A. 83.0% of donors in Group A were heterosexual when compared with 69.0% in Group B. The primary reason for donating in both groups of potential donors was 'wanting to help' (46.0% 'altruistic donors' in Group A versus 72.0% in Group B). Fewer donors in Group B (37%) had specific restrictions about the use of their sperm when compared with 46.0% in Group A. LIMITATIONS, REASONS FOR CAUTION: As this was a retrospective study, there is a chance for the introduction of bias. WIDER IMPLICATIONS OF THE FINDINGS: We have shown that despite no active in-house recruitment procedures, we are managing to recruit more potential sperm donors after the change in UK legislation, and we are able to meet the demand for treatments with in-house recruited donor sperm that is a reassuring finding for donor sperm treatment services in the wider UK. FUNDING/COMPETING INTERESTS: No external funds were sought for this work. None of the authors have any competing interests to declare.